ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: jmcneil189 on May 29, 2011, 08:12:37 pm
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Hey all,
I was diagnosed in July of '10 with a golf ball sized vestibular schwanomma. Apparently, I had it for six years and was not aware of it, so I named it after my ex-wife, since that's how long I had been divorced and it caused me all kinds of problems. I dealt with the nausea, stumbling, and migraines for eight months, til my family finally talked me into seeing a doctor. I'm a very stubborn man. My doc did a couple tests and sent me to the Memorial Hermann ER, where they did a MRI and lo and behold, it was a tumor. Six days later, they removed the tumor successfully, but not without consequence. When my doctor told me I would experience sykinesis, I thought it was some cool super power. To my dismay, it was not. Damn doctors and their big words. Anyhow, while in recovery, they discovered i have a pituitary adenoma as well, but they decided to leave it be, since it wasn't life threatening.
Fast forward to 10 months later, and I'm showing little improvement in the facial paralysis and drunken walking areas. The county general docs say it will take 2-3 years to get the majority of facial movement back, but it will never be fully as it was. I also lost hearing completely on the left side.
I go for my eyelid implant in July, so hopefully that will allow me to drive, so I can do some sort of work, since the wonderful people at the Disability office keep denying me and I have to keep appealing. But that's a whole 'nother psychotic rant in itself.
I'm honestly at a loss as far as what to do, so I figured this couldn't hurt.
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I am sorry for the problems you have gone through. I know it has not been easy for you. You are not alone in your story with problems from your acoustic neuroma. If anyone understands similar post surgery issues, several on this forum will understand. You were right to post to this forum. I hope you will find comfort here from those that understand! Take care!
Windy
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jmcneil189 ~
Hi, and welcome to the ANA discussion forums. Thanks for taking the time to register and post. Of course, I know - like most of us - you would rather not have a reason to be here but since you do, I trust that we can offer you support and encouragement as well as some information on specific issues. Our membership is diverse and global although most are in the U.S.A. Some had surgery, some irradiation, some both (Jim raises his hand). We have folks with a wide range of outcomes. Many are similar to yours. Some have seemingly intractable issues and some had excellent outcomes (Jim's hand goes up, again). Whether we've had the exact same experience or not, all of us understand what you're going through. ANs are relatively rare so family and friends are usually clueless about what they are and why you are still struggling with problems months after the surgery. The usual question is: "didn't the surgery fix it?" We know the answer but few will bother to listen to it and most think the struggling AN patient is being a 'hypochondriac' or just 'milking it'. To be honest, this is a frustration many AN post-op patients deal with so you'll get lots of empathy here as well as few suggestions for how best to deal with the AN-related deficits as well as the general lack of support from those close to you. I got the impression (from your post) that you didn't have much time to research doctors, procedures, etc prior to your surgery. Unfortunately, this situation too often results in post-op issues due to the fact that ANs are unusual and many surgeons don't have a lot of experience operating on them so complications - which are inherent in this kind of specialized surgery - often crop up, post-op. I'm sorry they have in your case but they probably won't be permanent . However, they are still a burden, I know. I trust that posting here will render some good advice and I can guarantee that it'll result in receiving support from folks who know what you're dealing with. Please try to stay connected, here. Thanks.
Jim
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There were no real issues from surgery. The doctor/surgeon was head of Neurosurgery at UT Medical. I just wasn't fully aware of the "side effects" from surgery. All but two of my facial nerves were being pressed against, hence the issues. I'm just trying to hold on to sanity since I've had to change my lifestyle so drastically.
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Hi New Guy!
You don’t mind if I call you new guy do you? Thought not. I'll cut right to the chase. Being a Post-Op AN patient sucks, hard ^-^ ! Its not glamorous. Its not clearly understood even by the professional community. And, its certainly not easy. If it were, everyone would want a piece of this action. I'm fast approaching the second anniversary of my surgery. Only in the last six months have I started getting some movement back on the left side. I'm still nursing a bum eye and my balance is awful. I'm also SSD, on the left. Having said all that, I'll never give up the hope that some day, maybe soon, I'll regain full facial function and walk with confidence in my balance. Until than, I've learned how to make the best of this new normal life I'm happy to be living. Remember, as bad a things may seem right now it sure beats the alternative...I'm sure you'll agree with that! Other forum members will chime in with a more conservative, welcoming message. But me, I'm more of a realist...what we're left to deal with is "real" high on the "list" of things that bite!
Here's a tip for you. If you wear glasses, put clear contact paper over the lens of your left eye; you won't be able to see past it, stops the double vision. Sounds like you've still got some double / blurry vision working against you making it difficult to drive. Either that or your balance is pretty whack and its just unsafe for you to get behind the wheel, you weren't specific. I did the contact paper thing until my eye muscle healed and the double vision cleared up. If you don't wear glasses you can get a pair of those cheap bi-focal readers at the CVS; I had a pair of those made up with contact paper...worked great! One more tip. If all else fails, tape your eye shut. I'm sitting here right this minute with my left eye taped shut to sooth the irritation from the dry eye...that works too! I've found that plain old medical tape, paper, works best!
I went back to the same job I had before my three week hospital stay. In fact, I was back to work 10 days after being discharged from the hospital, bum eye et all! Don't know what you did before your surgery but you really should dust off and go do something. If anything it will give you a feeling of accomplishment and its great for morale...sounds like you could really use a bump in that department for sure! You were able to sit at your computer and type a forum post...sounds to me like you could be working some sort of job.
Wishing you the best...really!
Take Care!
;)
Doc
P.S. Acoustic Neuroma's are notoriously slow growers. If you had a "Golf Ball" sized Tumor, it was probably growing in your head a lot longer than six years. I do like the ex-wife analogy though...nice!
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Welcome to the forum. I am in the Golf Ball-sized Tumor Club as well. 15 months ago they removed about 90% of it in a 32 hour surgery. I had a number of challenges over the year, but most have faded. I still suffer from vocal paralysis on the left side, but even that is recovering nicely.
As difficult as things are, don't give up. Everyone heals differently. I believe that positive attitude counts for an awful lot, as does always pushing forward as far as you can, resting, then repeat, basically forever. ;-) It is kind of like breathing.
Doc mentions using clear contact paper over the lens of your glasses (if you wear them). I used tape initially after an occupational therapist coached me through identifying where the double-vision began. Later, I ended working with an optologist who installed a prism (a clear adhesive fresnel-type lens) on my lens and that not only corrected the double-vision, it helped retrain my brain. Through the use of successively weaker prisms I was back to normal in a few short months. Even if you don't wear prescription glasses, this might work for you through the use of non-prescription lenses.
I hope this is helpful, and feel free to rant away...this is a safe place for that.
-Tod
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Welcome to the forum!
:o You have been through a lot and it is sooo good that you posted to vent and know that you are not alone (as the previous gentlemen have chimed in).
I'm a member of the olive group, and if you scroll down to my signature, you will see that I have had every possible procedure/surgery for my facial paralysis from a facial nerve cut.
Olive was significantly pressing on the brainstem, and she was a bloody AN, which is not common. I am thankful I didn't stroke out. I was one of the lucky "worst case I've ever seen" members and the bloody thing would have killed me in 5-10 years, they suspected.
Like Doc said, basically, post AN life sucks (for some) and then there are others who just bounce right back to what they were doing before surgery. I'm 5 years post op this June, and it has been quite the ride.
I do not suffer from the "drunken walking" but do have severe tinnitus, this "brain fog" and disequilibrium. It is a full or part time job for some to get to a "new normal."
Yes, it can take years, and perseverance and patience is of the upmost importance. Also just please DON"T GIVE UP! Keep working at it.
Have you been to a vestibular re trainer for the drunken sailor walk? Maybe you've been there, done that, but you are still pretty fresh post op in the big scheme of things.
Hang in there, vent and curse, but keep moving forward, OK!? Hope is what kept and keeps me going.
Maureen
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Hi and welcome to this forum. You have every right to vent, and we AN patients know that most people don't know what you are going through. Many AN people have good advice and words of encouragement. I wanted to take a few minutes to put in my two cents. Stay as physically active as you can. You're going to need your leg strength to help in balance issues. Vestibular therapy is helpful if you haven't already been there. Finally, keep up the fight, everyday !!!
God Bless.
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Welcome to the forum! I am also a member of the golf ball club. As to the facial paralysis issue, I did not begin to have noticeable movement until about 18 months post op, so I do not accept the "one year window" theory. Although I still have partial paralysis, I have definitely seen improvement after 2 years. Like the others, I would encourage vestibular rehab. For me, it was difficult to find. I especially enjoyed your sense of humor. Keep writing! How is your vision now? Susan
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FYI.....To Doc......Just becouse you can typ a post on this site does not mean you are capable of working.
Other symptoms come into play...vertigo,nausea,tinitus pain in neck and head....muscle spasms,forgetfulness.loss of balance at any givin time,state of mind,anxiety.
You can not put youself in someone elses shoes and say they can work....Sorry ..Rant
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FYI.....To Doc......Just becouse you can typ a post on this site does not mean you are capable of working.
Other symptoms come into play...vertigo,nausea,tinitus pain in neck and head....muscle spasms,forgetfulness.loss of balance at any givin time,state of mind,anxiety.
You can not put youself in someone elses shoes and say they can work....Sorry ..Rant
...got all those things and still work a 50~60 hour week that includes airplane travel...its what we do..! No need to apologize, you didn’t give me that nasty AN...did you?!?
Take Care!
;)
Doc
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Calm down people. I'd love nothing more than to work. I was cranking on 2 full time jobs before the surgery. Anyhow, being only able to go to county hospitals has played a big role in not being able to work. I have to do appointments on their schedule. Hell, I didn't get a follow-up MRI until 6 months after my discharge. The other big contributor is in fact a visual problem. I tried the tape thing, and a patch. Just flat out can't drive with that for safety purposes. The constant blurring of the left eye plays another role in getting to and from work. The other is the county hospital won't approve any type of hearing aid other than the conventional over the ear, which the audiologist says is useless to me and I just have to deal with it. Hopefully, after the weight implant surgery in July, things will be different.
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Welcome to the forum!As you have read we all have our own opinions and are not afraid to share them! ;D
Everyone is different in thier healing process...
I wish you well.Its tough not being who you were before the sugery.
Some things you get back some things you do not...Its a fight to get the help you need to get better becouse there are so many options to try.
All we can do is what we can do.
HUGS.....Sorry for the ruffled feathers... :-X
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Yes the opinions are so varied!
Some people sugar coat, others don't.
Hope you stick around. I have 5 years of post op experiences that can help some. It is a hard road, especially with the visual problems and 'drunken sailor' walk.
I too have the blurry vision because I need to keep the eye lubricated 24/7. Everything is done slowly and driving is especially tricky. I have to be very careful, and just can't 'rush around' like I used to. While the rest of the world is going cyber speed, it seems. Just take one day at a time, and like I said before don't give up hope.
Maureen
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Did thy relate your pituitary tumor and your acoustic neuroma?